Monday, October 26, 2015

Blogging has changed a lot since I started doing it ten
years ago. Back then, most of my readers were regulars – the same handful of
people who made the rounds of the same blogs I was reading. We had continuing
interaction and conversation in a variety of locations on a variety of
subjects. At that time, in most cases, it was safe to assume that people
reading one of my posts had read other posts of mine as well.

Not so anymore.

Social media has changed the nature of blogging. If I want
anyone to know I have a new post up, I pretty much have to post the link on my
blog’s Facebook page. (I guess I could tweet it, if I didn’t loathe Twitter so
much.) Once the link has made its way into social media, it takes on a life of
its own. It gets posted elsewhere, people see that a friend has “liked” it, and they click to see what it is - and suddenly a large number of my readers are reading
a single post in isolation, without any context about me, my writing, or my
life.

This isn’t a complaint. It’s just an acknowledgement of a
new dynamic – a new reality.

Back when despite being on the internet, the blog felt more
insular, I did a lot of meta-communcation – writing about writing, blogging
about blogging. I did a lot of deconstructing – reminding people of what I was
not writing, and why. I’m guessing that many of my current readers haven’t read
most of that writing, and so, here is a bit of a recap, ten years on.

1. Everything I write is true, but there are many truths
that I don’t write about.

Everything you read on the blog has actually happened. If I
say that Bud did something, you can count on the fact that he did it. But there are
many, many, many things that happen in our lives that do not, and will not ever, make it on to the blog. They’re private.

2. If you only know Bud from the blog, then you don’t know
Bud.

See #1. Here on the blog, you are getting a glimpse into a
portion of who Bud is. He has greater dimension and more complexity and, I’m certain, he is far more
interesting in real life than he is on the blog. Please do not make assumptions
about his “level of functioning” (whatever that is) based on what you read here.

3. I make no attempt to universalize my experience or Bud’s
experience.

As the saying goes, “if you know one person with autism, you
know one person with autism.” I can only speak to my own experience,
and I am not suggesting that your experience (if you have a child with autism)
will look anything like it. As is true with every other element of the human
experience, your mileage may vary.

4. If it sounds like I’m telling you what to do, it’s
because I haven’t written it well.

This blog is not a “how to.” I don’t give parenting advice and I try hard not to be prescriptive. Anything here that sounds like parenting advice is reflective of my inability
to phrase my story well, and not of my intention to tell you what to do. I don't pretend to have the answers.

5. I won’t apologize for being positive.

I am not trying to “whitewash autism” (and I apologize for
the use of that phrase, but it’s the one I keep reading in the current press).
My blog has a focus on the positive, because that is who I am. My life off-blog
also has a focus on the positive, despite the fact that I have experienced some
really heartbreaking things. If I were a different sort of person, I could
write a different sort of blog, which would be equally true. (See #1 above.) But I'm glad that I'm not, and that I don't.

So, there you have it. Caveat lector. Let the reader beware.
Remember that anyone with a computer and an internet connection can write a
blog. I’m just a person who loves her son and wants to share some pieces of her story.

Tuesday, October 20, 2015

When Bud was four years old, he was a huge fan of Raffi. Okay, he's still a fan of Raffi - but now, he's a fan of Raffi in addition to a hundred other things. Back then, Raffi was part of an exclusive circle. As a result, we spent a lot of time in those days listening to Raffi's music and watching Raffi's concert videos on VHS. So, when we learned that Raffi was doing a show in Boston, a mere two hours away, we scooped up tickets to take our preschool boy.

The trip to the show was an event in itself - we little country mice packing up for a trek to the big city, with a boy who still required us to pack for a three-hour event as though we were going away for a weekend. But we did it. We braved the Boston traffic, magically found parking, and then walked our boy through the sights and sounds of the city until we got to the concert venue.

It wasn't until we were in our seats that it all started to fall apart.

I couldn't tell you the details if I wanted to. One of the lovely things about being me is that I simply don't retain the specifics of the bad stuff. I remember it in a global way, but I just don't hang on to the moment-by-moment hard times.

So, I know this. By the time Raffi took the stage, Bud and I were sitting in a quiet corner of the lobby, where I was trying, mostly unsuccessfully, to calm his anxiety and sooth his fear. We made a couple of attempts at re-entry, but ultimately, we ended up making the trek back through the city streets, back to the car, and back on the long ride home, without having heard a single note of Baby Beluga - or anything else.

I thought of our Raffi experience earlier this year when, once again, Bud and I ventured out to see another musical favorite, Laurie Berkner.

This time, the experience was completely different.

Though Laurie's audience was as raucous as Raffi's had been all those years ago, Bud hardly seemed to notice the chaos. He was unfazed by the preschoolers shrieking and dancing all around him. When beach balls started bouncing through the audience, he reached for them to swat them away. When Laurie asked a question, he gleefully shouted an answer. And when Laurie asked him to sing along, he joyfully belted it out. And, throughout the performance, he kept notes - or, more accurately, he instructed me on the notes that I should keep, recording each song in order so that he would be able to use the information later.

We had a wonderful time.

A few months later, we learned that the Kratt Brothers were coming to town. (Do you know the Kratts? They are currently the stars of the PBS series Wild Kratts, but they always be "the Zoboomafoo guys" to Bud and me. We've been fans for a long, long time.) Bolstered by our success with Laurie Berkner, I purchased tickets to both the show and the meet-and-greet that followed it.

Bud had as much fun at the Wild Kratts show as he'd had at Laurie Berkner, but the meet-and-greet was the real draw of the day. We waited in a long line full of very little kids, and when it was his turn, Bud had solid one-on-one time with each of the Kratt Brothers. First, he met Chris.

"What's your favorite animal?" Chris asked him.

"I like dogs," replied Bud. (And, not for nothing, does anyone remember THIS?)

"Oh, do you have a dog at home?" Chris asked.

"Nope!" said Bud.

"You just like them?"

"I sure do!"

Chris signed a picture for him, and then noticed that Bud had brought a book from their first, pre-Zoboomafoo show, Kratt's Creatures.

"Do you want me to sign your book, too?" he asked.

"Sure!" Bud beamed.

And then we were on to Martin. He started chatting with Bud, then noticed the book Bud was carrying.

"Hey! That was our very first book!" he said.

"Yeah!" Bud said, and handed Martin the book so that he could sign it, too.

"Do you have any questions for me?" Martin asked while he signed.

"Yes," said Bud. "Is blue your favorite color?"

"Yes it is!" said Martin. "That's why I always wear a blue shirt!" Then he looked at Bud, and said, "You're wearing a purple shirt. Is purple your favorite color?"

"YES!" said Bud, delighted that he'd guessed right. (And it was only then that I wondered if Bud has planned his outfit, knowing that the Kratts would be wearing their favorite colors, too.)

They chatted about Bud's favorite Wild Kratts episode, and then we headed out. Bud was over the moon.

In the car on the way home, Bud informed me that The Wiggles would be coming to town in a few months. On his birthday.

I booked the tickets the following week.

Last month, on Bud's sixteenth birthday, we headed back to the theater for the Wiggles show. We had our notebook in hand to capture the set list, which would be used to make future PowerPoints. I had my camera at the ready. We were good to go.

On the way to the show, Bud said casually, "I can't wait to meet The Wiggles."

I could feel my panic start to rise. "No, Bud," I said. "The Wiggles aren't having a meet and greet. It's just a show."

"Okay," he said. "We'll see."

"No, Bud," I said, more firmly. "Seriously. We're just going to sit in our seats and watch the show. We're not going to meet them. No one is going to meet them. I don't want you to be disappointed."

"Okay," he said.

"I need to make sure you understand, Bud," I said. "We're not going to meet them. Do you understand?"

"I understand," he said. And then he looked out the window and added quietly, "But we'll see."

We made it to the theater and I recognized instantly that Wiggles fans, as a whole, are even younger than the fans of Laurie Berkner or The Kratt Brothers. For the most part, they seemed to be under five. If Bud noticed, he didn't mention it, and it certainly didn't seem to bother him.

As we made our way through the lobby, a familiar-sounding shriek drew my attention. I looked over and saw a mother with her preschool son. He was upset. Profoundly, inconsolably upset. I don't know them and I don't know their story, but the tableau looked very familiar.

We lost sight of them as the crowd buoyed us along, and soon we were in our seats and the show was starting and we were singing and shouting along with the other fans in the crowd.

If I'd done any research at all, I'd have learned that The Wiggles have some predictable shtick built into their show, and I would have come to the show more prepared. For example, many of the kids in the audience were holding roses - real roses, plastic roses, paper roses, whatever. As it turned out, there was a point during the show when the Wiggles left stage and wandered through the audience collecting flowers for Dorothy the Dinosaur.

As it happened, the family sitting next to us had come prepared. Wiggle Lachy made his way over to get their flowers and, since Bud was sitting on the aisle, Lachy had to lean over us to talk to the little girl, ask her name, and thank her. Then he stood up right next to Bud, and started to scan the audience for more flowers.

Bud saw his opening. "Hi, Lachy," he said. "My name is Bud."

Lachy looked down, and if he was surprised to see a sixteen-year-old fan looking back at him, he didn't show it. Instead, he tucked the flowers he was carrying under his arm and he held out his hand.

"Hello, Bud," he said, with a handshake and a smile. "Are you enjoying the show?"

Then it flashed to the family we'd seen in the lobby when we arrived. The family with the child who was frightened, or overwhelmed, or just simply could not handle it.

Then it flashed to us, twelve years earlier, at a similar venue, sitting in the lobby during a Raffi show.

I wanted to run out of the theater and into the lobby to look for the family huddled in a quiet corner, trying to make it all okay.

I wanted to tell them not to worry, and that if they just gave it time, it would all work out.

I wondered, though, if when Bud was four years old, I would have been able to view him spending his sixteenth birthday at a Wiggles show as a mark of success. I'm afraid that, from that vantage point, I wouldn't have been able to recognize the tremendous growth and development that had led us to that day.

Last year, I read this post by Lydia, a young adult with autism, who introduced me to the concept of "growing sideways," along a unique developmental trajectory that might not always be clear to others. Her words resonated with me deeply.

Bud still loves all of the things that he loved in preschool. His passion now is the same as it was then. But now, he uses the things he loves in entirely different - and extraordinarily evolved - ways.

When he was a preschooler, Bud loved the Teletubbies and Mister Rogers and countless other preschool shows. Back then, he watched videos, and listened to music, and played with toys.

These days, Bud still loves the Teletubbies and Mister Rogers and countless other preschool shows. But now, he uses them as the paradigm through which he expands his horizons and hones his skills. Now, when Bud works with his treasured programs, he researches. He investigates. He catalogs. He transcribes. He narrates. He documents.

Bud is a master of Google and YouTube. He is expert at Word and PowerPoint. He is an extraordinary speller. He can pull out main points to create titles and captions. He uses punctuation appropriately. He types with incredible accuracy and speed. He can freeze frame and cut and paste and size images. He looks for patterns and themes and relationships.

Bud uses the things he loves as jumping-off point. He researched the Teletubbies and learned about Ragdoll Productions, and the co-creators of the program, Anne Wood and Andy Davenport. He learned how the episodes were constructed. He learned about the actors involved with the programs. And then, he sought them out in other arenas - learning about their other projects, expanding the realm of his interest, and becoming a bit of an Anglophile in the process.

Bud's interest now is in what happens behind the scenes of his favorite programs. His heroes are the voice actors who give life to the animated characters he sees on the screen. He's practicing his own skills as a voice actor, and he does a great X the Owl and an even better Tigger. He can mimic dialects with the best of them.

Bud borrows DVDs from the library to create PowerPoints that catalog them in a variety of ways - the scenes, the actors, the artists, the composers. Right now, he's delving into the works of Julie Andrews and the Sherman Brothers - both sparked by his new-found love of Disney's Mary Poppins (the stage production of which we'll be seeing later this year).

Bud may be the only sixteen-year-old I've ever met who never utters the words, "I'm bored." There is always more he wants to investigate. More he wants to dissect. More he wants to compile.

But Bud's sideways growth has not only been in the areas of British children's programming and the voice actors in classic Disney movies. He is also expanding his social repertoire. Last Saturday, during a visit to the local library, he bonded with our
librarian Bill over a conversation about Sterling Holloway, Bud's favorite voice actor, who provided the voice
of Kaa in the Jungle Book, Mister Stork in Dumbo, the Cheshire Cat in Alice in Wonderland,
and the beloved Winnie the Pooh. Bill told Bud about his son, who is currently enrolled in a degree program in animation and who hopes to work in the field.

And, of course, there is Bud's interaction with Lachy at the Wiggles show. In order to make that happen, Bud had to:
1. Set a goal, then
2. Read the hectic, multi-sensory environment to
3. Identify the exact "right" moment of opportunity, then
4. Communicate at the right moment using
5. The right words,
6. The right tone, and
7. The right body language.
He had to:
8. Initiate
9. Listen, and
10. Respond appropriately,
which meant he had to coordinate his
11. Speech and
12. Movement.
And then, he had to
13. End the interaction gracefully, and
14. Celebrate the achievement of his goal.

And he handled it like a pro.

That's the moment I want to capture and share with the family in the lobby who's wondering if it will ever be okay. Because I'm telling you: if you are inclined to think that Raffi at four to the Wiggles at sixteen does not represent progress, then you need to think again.

What Bud keeps teaching me, over and over, is that when he can use as a starting-point a context that is known and comfortable and familiar to him, it can propel him to life-changing growth. Sometimes his growth might be sideways, but inevitably, it ends up moving him - and moving us both - a long way forward.